Table 3.

Phase 2 themes and representative quotes from analysis of interviews.

Theme	Representative interview quotes
Caregivers of children with T1Da and autism face emotional burdens that may be more than additive compared with raising a child with only T1D or autism, and they describe the constant monitoring and work required to care for their children.	“Autism doesn’t go away because of a diabetes diagnosis.” “How are we going to do this forever?” “I am a nervous wreck every day.” “She doesn’t show any signs of being low until she is on the brink of losing consciousness and then all of a sudden she is almost passing out.” “There is a different kind of fear when it comes to diabetes than with autism.” “Things are very overwhelming---I cried myself to sleep a couple of nights last week.” “We are working harder than any other parent in the diabetes clinic and no matter what we do or how much monitoring, or how much insulin we give, it’s like nothing seems to help.” “We try so hard and it seems like it’s not doing anything.” “He cannot tell me if his blood sugar is low or high so I always have to be right there, constantly monitoring.”
Caregivers of children with T1D and autism express frustration surrounding the amount of T1D information they are expected to learn and the manner in which it is presented.	“Sometimes people should understand that the best learning is from somebody teaching you and not from reading it.” One caregiver describes a nurse educator who told her “you should know how to do this already. Just change the insulin. You should know how to do that already,” and her concern “that’s a really dangerous statement to make to a parent who’s new, who you never taught to change those doses.” “They showed me how to put it [the CGM] in and sent me on my merry way, which was the hardest thing ever to learn. I had to then put it in on my own and it took me three tries and I ruined two sensors. I felt so bad because I didn’t know how to do it.” Another caregiver described how a health care provider “handed me the Pink Panther [reference book regarding type 1 diabetes] and thought I had read it all.” “I feel like especially with the hurdles we deal with, a lot more education from the onset would be very helpful.” Caregivers offered solutions such as “make step by step videos like the ‘how to’ videos seen on YouTube” and offering “extra appointments and longer appointments.”
Caregivers describe numerous challenges surrounding their child’s experience in the school setting.	“I am literally on call even when she’s at school. Even though she has an aide and there’s a nurse, they will still call me to come help take care of her on a daily basis.” “They’ve dealt with her eloping from the classroom for years and they know she’s a good hider. They knew about the diabetes. I mean, I know they’re only human, but my goodness. If you lose a diabetic autistic child, that’s kind of a big deal.” “I stepped down from my position as a paralegal to take care of my child and I now work at my daughter’s school, just to make sure that she is ok.” Multiple caregivers described how they had to take “time off”, “reduce to part-time,” or even “take jobs at the school to be available to assist with [their] child’s care”. “Schools are not doing the best they can to help these kids. Sometimes they think the kids can do it on their own where you know they have more challenges and they need more help.” “No one can work together to get us what we need.”

^aT1D: type 1 diabetes.